All words that are in blue have a link to them to wikipedia.com where there is a definition of that word. I hope that will help. If you have any questions about anything please feel free to e-mail me at ihaveic.com@gmail.com

***My urethra is blocked!!***: I am very, very worried about the person who was researching this subject and it led to my site. I’m very concerned for you. This is very serious and the only advice I have is to get to the hospital as soon as possible. Drop everything, call your doctor, call an ambulance if you need to and get right to the hospital!!! I added a link for urethra, there are some problems listed that you can look up that are linked into that page. I’m praying this will help you!!! I’m also praying that you will be ok, and your urologist will be able to figure out what is going on and heal you!!!! Good luck!!!!

 

How bad is a cystoscopy I’ve had 3. Each one I was under anesthesia for, and I didn’t have any bad reactions with. It was an out patient procedure.  Some cystoscopies are done with out anesthesia, depending on how sensitive your urethra and IC is. Some people are totally fine with out going on with anesthesia and have had no problems. I am very sensitive and need to be knocked out. I have never had problems, but I will try and get some other stories from people so that you will be able to have some more answers and some more experiences for you soon!

Scared of a hydrodistention/cystoscopy: Everyone I’ve talked to has been ok with cystoscopies with hydrodistention. They are pretty simple, however I know how you feel. It’s kind of scary knowing what they are going to do, and if you’re going to be having this procedure to be diagnosed with IC  it’s really scary. You don’t know what to expect and I was scared to death the first time wondering what the results would be if I had IC or not. It’s scary finding out the truth, but once you do then you start fighting it. Just make sure you’re very informed about what’s going on and know your IC stuff. IC sucks, I’ll be honest it really sucks! But the more you know about it, the better prepared you’ll be and you have a good chance of knowing how to go about fighting it and treating it. There’s no cure, but it doesn’t mean you give up. Fight with everything you’ve got so you can have a semi-normal life.

What to do about blisters around the stoma- I have had some experiences with blisters. Well lots of blisters. Now I’m not sure if you mean right near the stoma, or around the edges of the wafer. So I’ll just explain both! The blisters right around the stoma can be helped with the Adapt powder. Hollister makes it, but you can order it where ever you normally order your supplies. Now when you apply the powder make sure that you don’t get too much on. It will make a real mess and your wafer won’t stick. Ok I’m going to try and explain this the best I can. You know how there are really two different parts to the wafer, well visual wise. Like the part that’s right around the stoma that is tape less and the other part that is like bandaid material? Well, I never spread the powder to the bandaid area because I found the wafer won’t last as long if I get the powder in that area. I hope I have this explained ok, if I don’t you can e-mail me. Now I also get blisters around the outside, like where the band aid material is. What I do, is wait until the area of the wafer starts to come up a little bit. Then I take a q-tip with some triple antibiotic (or neosporine) and then I use the q-tip to spread around the triple antibiotic or neosporine. The I take a gauze pad and put tape over it. You can either change it everyday. Or I usually leave it on for a couple of days and it’s gone by the next time I change my wafer. I hope this helped it if doesn’t let me know.

Do instillations hurt- Well this is tough. It depends on how bad your bladder is and how bad your urethra is. First of all always ask for lidocaine jelly to put on the catheter so it will numb the urethra. This may not be necessary in the beginning. After a while it’s going to start hurting because of the multiple catheterizations. Now an IC bladder is very sensitive. Normally there is some sort of lidocaine in the instillation to numb the bladder. It will help. But there is a certain amount of pain in an instillation. Normally it’s minimal in the beginning. But it does depend on how bad your bladder really is. It’s a very strange feeling, and when you start doing it yourself it’s kind of strange just because you’re catheterizing yourself. So once you get used to it it gets better. I’m sorry if I’m not really answering your question but it differs from person to person. I do ok with them. Now it’s starting to hurt a lot more when I do it. My doctor will give me an instillation once in awhile, and he uses lidocaine jelly when he does it, it helps with the urethra pain. But it is going to hurt, if not in the beginning then after a while of doing it. My instillations helped me a lot, until my bladder couldn’t take it anymore. So don’t be afraid of it, just expect it’s going to feel weird. Hopefully you will be helped by it, and you’ll be able to do it for awhile.

Hunner’s Ulcer- If you click on the word Hunner’s Ulcer it will send you to the link on Wikipedia where I got this information. I will summarize the definition here. A Hunner’s Ulcer occurs in 5-10% of patients with Interstitial Cystitis. They are like all other ulcers they bleed and ooze. From what I have heard from people who have them you will see blood in your urine. They are diagnosed by a cystoscopy with hydrodistention. There are options to treat these. One includes a significant change in diet. You can modify it to remove foods and drinks that are high in acid and/or caffeine. Coffee is one thing that is good to remove, any types of coffee including decaf. Also all teas, green tea, soda, and most fruit juices. The web site for the IC Association has a very good list of foods that should be avoided. Another form of treatment is fulguration which is having the ulcers burned off with either electricity or a laser. Or a resection which is cutting around the ulcer which will remove both the ulcer and the surrounding inflamed tissue. There are some patients who just choose to live with the ulcer and treat them with bladder instillations and/or pain medication/therapy.  Elmiron is a drug that is used to treat and prevent the ulcers.

Hypafix- Hypafix is a wonderful thing. It is what they use to cover the IV site. It is also good to use for adhering bandages to healing wounds. It is clear and acts like a layer of your skin. It sticks well and I love using it!!!! I have not found it at WalMart. I have searched for it in store and online and it’s not there. You can find it at supply companies like Edgepark medical supplies at edgepark.com and Byram Health care at byramhealthcare.com.  Also at CVS there is a bandage called Suresite Window Dressing that is hypafix with a different name. Ok well now I feel like a fool. I have been looking up a product called tagaderm, which is exactly what I described here. The skin layer that is able to breathe and covers the IV site, stretches and everything. It’s also available at Walgreens. LOL so now for hypafix. Hypafix is available at edgepark.com and byramhealthcare.com. I have not found it in any other drugstore, or WalMart or anything like that. However, I did go to yahoo.com and typed in hypafix and there were a ton of links that came up that sold hypafix. So I would say try the two medical supply companies or online. Also is there is a small store that provides supplies like tapes and canes and just odd things that you would normally need to go to a large medical supply company for then I would look there and see if you could find it. You probably can. I have never used hypafix, but let me know where you find it and how it works. I’m sorry I can’t be of more use. I was searching through some of my supplies and the millions of kinds of tapes I have. I do have a little bit of Hypafix left. So I will be putting some pictures up here soon.

How to hide nephrostomy bag tubing: When I had my nephrostomy bag, I would clip, with safety pins (or use the velcro straps they gave to me and just put them around my waist), the bags into my pants. Obviously they needed to be a bit bigger. However I was home most of the time. But I would empty the bags before I would go out, and the tubing and the bags would go right into my pants. Now I only stayed out for a couple of hours. I had a lot of problems with my stitches getting scabs on them and making it pull my skin, so I had a hard time. But if I was out for a couple of hours the bags and tubing fit fine in my pants.

Can urostomy bags be used when changing nephrostomy bags: My nephrostomy bags were always changed in surgery, and I never had to change them. So I’m not sure, but I would have the big bags with the nephrostomy tubes. As far as I know the urostomy bags can not be used. I have the urostomy bags now, but thinking back to the nephrostomy bags, and the tubing I can’t see anyway the urostomy bags could be used. The tubes coming out of your kidneys are there to help the urine drain. There is no way it can be changed. Also the urostomy bags attach to your skin. They are like band-aids, so I do not believe they can be used on the nephrostomy bags, however it would be a great question to ask your doctor.

Can you see your urostomy pouch under your clothes: This all depends on what you’re wearing. Lighter colored clothes I have found that you can see the top of it sometimes. It all depends on where your stoma and bag are located also. Mine is located right next to my belly button. Also it depends on how tight you wear your shirts. Now if I wear clothes that might be a little snug, what I do is I wear a tank top under the shirt and it hides the outline of the bag. Shirts that are looser and that have patterns on it are better so you don’t see the outline of the pouch as much.

What to do for IC Belly: “IC belly” is a term all of us ICer’s use because we are in pain and all of us walk around holding our pelvic region and bent over. But there are ways to help our IC belly. What we can do is use heating pads, at a time when you cannot use a heating pad you can use the heat wraps by Thermacare or Ben Gay. They are both available at WalMart and they have them made for the pelvic region. It works for 8 hours. They are great! I used to use them all of the time. Now for some people the heat doesn’t work and cold works better for them. So you can use cold packs and ThermaCare and Ben gay also makes cold wraps. The other thing I used was some peppermint oil. If you rub it into your pelvic area, it will help you tremendously. It is meant to help with nerves and help your pain a lot. The company that makes it is called Essential Oils. They have a website. If you can’t get it e-mail me at Catwoman100780@yahoo.com and I can get a hold of someone who will be able to get some for you. If anyone else has any other ideas that helped them let me know. I hope this helps!

How to properly put on a urostomy bag:I have been reading up on what everyone has been searching for well at least what key words brought them to this site. I was going to have the urostomy section done, I just had surgery on April 12th, I got my neobladder finally! I was hoping to have the urostomy section done before that but I didn’t. So while I’m recovering I’m planning on working on that. Give me just a little bit more time I have a lot of information together already to start writing all of the products and how to use them properly. So I will try and start this by the end of the week I have some things going over the weekend but should be able to really push the middle of next week. I’ll try my best. Thank you for bearing with me!

Urostomy bag leaking: If your urostomy bag is leaking you don’t have it on correctly or it is overdue for changing. I used to use Adapt Paste to put around the area where you cut the hole that you put around your stoma. What you need to do is put the paste around there and stick the bag on. This will help you create a good seal and also will give you a few days extra with the bag. I used to be able to get 5 days out of one wafer and bag. I hope this helps!

How do they cut you for a urostomy surgery: There are two options for the way they will do the urostomy surgery, well at least the way they told me and I’m not sure there could be any other way! My urostomy was done laproscopically, I had about 3-4 “ports” which are the little cuts they use to go in with the instruments they use. You will have an incision in your belly button as well, and I have a very big scar from the drainage tube they used. That’s probably the biggest scar I have from the surgery. The other option is you will be cut open and they will bring out the stoma through your skin that way. My doctor told me that cutting me open might happen if they couldn’t create my stoma laproscopically. Now laproscopically is an ideal surgery, it’s not very invasive. However, you should always go with the option your doctor is most comfortable with. You don’t want him or her to do a laproscopic surgery if they aren’t comfortable doing it. My doctor had another doctor do it because he hadn’t done it enough times and he wanted someone to do it that had done it and was very comfortable doing it. He was in the operating room but helped perform the surgery. You always want your doctor to be comfortable with what he/she is doing.

If you had a urostomy can you get a neobladder?: Now this is kind of an iffy question because what I call a neobladder is a bladder made out of my intestine and I catheterize a stoma and empty my urine that way. It’s also called a continent urinary diversion. Now my doc calls it a neobladder as well. But I had a nurse say it’s not a neobladder a neobladder is when they take your bladder out and make a new bladder out of your intestine, put it where your old bladder was and you use your urethra to empty the neobladder, you would urinate normally. So the first one is absolutely possible. I had a urostomy bag and I got my neobladder!!! I couldn’t wait to get it! I love having it, it was a hard surgery recovery. The doc said I did better then expected. I did a lot better then I expected! But it’s harder to recover from then the urostomy bag surgery. The other “type” of neobladder I’m not quite sure about. My doctor has told me that he hopes someday that he will be able to hook me back up to my normal bladder. The problem he says is sometimes it doesn’t hook up well. There might be problems with the ureters hooking back up as well. So the other “type” of neobladder I’m not 100% sure of and I don’t want to say yes or no. What I would do if I were you is talk to your uro, they are amazing people and have helped us get through a lot. I hope you have a wonderful urologist who can help you through this. But always remember to ask questions. They will answer them to the best of their ability, and should find out for you if they can’t answer it. But the thing I can say to you and it’s going to sound cheesy is knowledge is power, and the more knowledge you have about your condition and everything that you want to get done the better off you will be. And you coming to this site shows me that you’re already on your way to looking into things you want to get done. I hope things work out for you, and please let me know what happens and how things go for you! Good Luck!

Can you use a TENS with an interstim: I have always used the TENS with an interstim. My interstim is turned off right now, but when it was turned on I used it in my pelvic area, and not near where my battery was. But I would talk to your doctor before you do anything with the TENS just in case!

Super Pubic Catheter Removal: I’ve been trying to remember what the super pubic catheter removal felt like for a little while now and now I remember and it wasn’t good but I’m telling you all the truth and nothing but the truth!!! LOL Ok what happened with me is I had a super pubic catheter put in when I had my Continent Urinary Diversion surgery. Now I had the catheter put in so that the urine would drain out of it when I was recovering from surgery and when I was going and plugging up my 2 catheters to stretch my “new” bladder for awhile! Now I had my catheter in for quite awhile and it was at least a month and a half if not a good 2 months! So when the catheter was taken out it had scabbed over, and you know the skin was really attached. So what happened was the super pubic wasn’t coming out easily. My nurse practitioner is female and she went and got my urologist because it needed a good man pull lol. I said if it needed a good man pull I need some lidocaine!!!! We waited a good 15-20 minutes for the lidocaine to kick in and my urologist came in and in about 2 seconds it was done and I didn’t feel a thing!!! What I would recommend is if your scared you can always ask for some lidocaine or you can just as for something to help with any pain, or you might not feel anything at all!! I’ve had drainage tubes removed and I feel just a little tickle after I feel the tube kind of come slithering out, I can feel it inside of me and it comes out within 2 seconds. The best thing about any catheter or drainage tube removal is it lasts about 2 seconds and any urologist, nurse practitioner doesn’t want to create any pain and will help you out. So ask for some lidocaine and you won’t feel a thing!!!!